Quote:
Originally Posted by buffym
Hi, I'm new here, and absolutely new to CRPS. My 9 year old daughter was diagnosed with CRPS on this last Monday, Oct 26th. She has had pain in her right foot and ankle for about 6 months, only when she walks on it. Initially her Dr thought she had Sever's Disease, but after months of no improvement, sent her to an orthopedic specialist who ordered an MRI. The radiologist made a diagnosis of CRPS based on bone edema all over her right foot. She is currently on crutches, and headed to Physical Therapy today. The orthopedist said she should try walking on her foot as much as she can as long as the pain is a 3 or less, but it is more painful that that when she tries. That is the only advice she gave us, and said we should come back for a follow-up in 6 weeks, and she should start PT immediately, which we are doing. It seems there there is more we should or could be doing. I live in a rural area in a small state, so I'm guessing finding Drs & specialists who have experience with this is going to be difficult. I'm overwhelmed with the information on the Internet, and this seems like a knowledgable group from the posts I've read so far. Would like to know what steps I should take to get her in front of the right Drs and specialists. Thank you.
|
I am saddened to hear this is happening to your daughter. I truly do not like to hear when young people have to fight this dreadful disease. I'd rather fight it ten times over than to have them suffer even one day with CRPS. You may want to contact a children's hospital for a good referral in your area of the state. Your daughter will want a Pain management Doctor that understands CRPS/ RSD. Also, ask your physical therapist about their experience in working with RSD / CRPS patients. This is not like other diseases, so an experienced PT is vital, or at least one that is willing to educate her or his self on how to help treat your daughter with this disease. One further point on getting a PT: If your daughter's PT is inexperienced, ask her/him if she/he is willing to consult with another PT that has experience in working with CRPS Patients. Here are some of the things that my doctors, Physical Therapists, and I have tried. Most doctors and PT's that have dealt with this disease before will be well aware of these treatments.
1. Mirror therapy (helps the brain imagine the symptomatic limb acting in a healthy manor; Retrains the Brain)
2. Flash Cards of feet and hands in various positions (CRPS patients struggle with identifying left and right limbs)
3. Physical Therapy
4. Desensitizing CRPS symptomatic limb using soft cloths to start and working way up to different fabric cloths and then on to other objects like popsicle sticks etc. (Desensitize 3 times a day and also after flare ups is what I have done)
5. Pain Management doctor
6. Medications prescribed by doctor
7. Music Therapy
8. Anti Inflammatory diet
9. Psychologist if depression becomes an issue (this is a tough disease)
10 Water Therapy (walking and doing Physical Therapy in the water helps take the weight off of the symptomatic Limb)
11. Tens Units and Spinal Cord Stimulators
12. Injections
13. OTHERS ON THIS SITE HAVE TRIED OTHER METHODS.. please add to what I've listed, if you'd like.
There is no cure for RSD /CRPS. Yet there is a chance for remission. The first 6 to 9 months of having this disease is the most opportunistic time for remission to occur, is what I was told.
Welcome to the site. The people here are wonderful and have a wealth of experience in dealing with this disease. Once again, welcome!